Anyone have brain problems because of the PSC?

July 17, 2008

I posted about a month ago about my neurologist thinking i may have

MS. Well I had my follow up yesterday. My sed rate is high (38) and

has never been that high before. I know that doesn't really show

much but that there is some inflammation somewhere. As for the

results from my lumbar puncture, my intercranial pressure (ICP) was

high. The normal is 7-15 and mine is 20. I am not sure what that

means, neither is he because the MRI was done wrong. The level of

IGG antibodies (?) in my CSF was also high. The other things were

normal but he said he still can't completely rule out or definatley

dx MS. If I do have it though it is early and they have great

treatments now. (that's what he said)

The MRI that they did was wrong. The didn't do it with contrast and

they didn't do my neck. I didn't know they were supposed to or I

would have told them at the hosptial, lol. He said that an MRI

without contrast is useless for an MS dx because you can't see if

there are small lesions. So I go in Friday for the MRI of brain and

c-spine. And they are doing it under sedation this time thank GOD!

He gave me some medicine that is supposed to help with nerve pain,

it's called Neurontin. I hope it helps, I need something. He also

did a ton of labs. (ANA, B 12, CBC w. diff, CMP, Folate, Free T3,

RPR, Sed Rate, TSH, Ferritin, FE, Total Iron Binding Capacity,

Tiisue translutaminase, creatine kinase, c-reactive protein,

aldolase, LDH, ACTH, Prolactin, HbA1c, and a UA and Urine porphyria

panel)

I was shocked, really. They told me that if there were any problems

with my tests they would call me and not wait the 2 weeks to see the

neuro. Well they didn't call so I figured there was nothing wrong.

The increased ICP is not just something that will go away from what

he said. There is a reason for it. He didn't have a specific answer

and he said we'll look into it.

So OF COURSE I come home and google it and find it can be liver

failure, heart problems, brain lesions, a stroke....anything. So

that worried me of course. My LFTs were all pretty much normal in

May. My alk phos was only 134. It makes me wonder if my liver is

causing the stuff because it's only been going on since May. I just

don't know what to think. I feel like I'm going to go nuts, lol.

At least I know that all this crap I'm feeling isn't in my mind.

I just hate the waiting. Has anyone had similar stuff with their

brain because of PSC or am I dealing with yet another completely

different illness?

PBC, PSC, Raynauds, hypothyroid, ???

July 17, 2008

Hi ,

I've been diagnosed with Fahr's disease (its even rarer than PSC) (calcium deposits on the brain) I don't know if its related to PSC. It maybe caused by a medicine I was briefly on for PSC (methotrexate in 1992). Hope they can find a base cause for all your medical problems and get on top of them.

Ian (52) PSC & bile ducts removed 89, Fahr's disease 07

I posted about a month ago about my neurologist thinking i may have MS. Well I had my follow up yesterday. My sed rate is high (38) and has never been that high before. I know that doesn't really show

much but that there is some inflammation somewhere. As for the results from my lumbar puncture, my intercranial pressure (ICP) was high. The normal is 7-15 and mine is 20. I am not sure what that means, neither is he because the MRI was done wrong. The level of

IGG antibodies (?) in my CSF was also high. The other things were normal but he said he still can't completely rule out or definatley dx MS. If I do have it though it is early and they have great treatments now. (that's what he said)

The MRI that they did was wrong. The didn't do it with contrast and they didn't do my neck. I didn't know they were supposed to or I would have told them at the hosptial, lol. He said that an MRI

without contrast is useless for an MS dx because you can't see if there are small lesions. So I go in Friday for the MRI of brain and c-spine. And they are doing it under sedation this time thank GOD!He gave me some medicine that is supposed to help with nerve pain,

it's called Neurontin. I hope it helps, I need something. He also did a ton of labs. (ANA, B 12, CBC w. diff, CMP, Folate, Free T3, RPR, Sed Rate, TSH, Ferritin, FE, Total Iron Binding Capacity, Tiisue translutaminase, creatine kinase, c-reactive protein,

aldolase, LDH, ACTH, Prolactin, HbA1c, and a UA and Urine porphyria panel)I was shocked, really. They told me that if there were any problems with my tests they would call me and not wait the 2 weeks to see the

neuro. Well they didn't call so I figured there was nothing wrong. The increased ICP is not just something that will go away from what he said. There is a reason for it. He didn't have a specific answer

and he said we'll look into it.So OF COURSE I come home and google it and find it can be liver failure, heart problems, brain lesions, a stroke....anything. So that worried me of course. My LFTs were all pretty much normal in

May. My alk phos was only 134. It makes me wonder if my liver is causing the stuff because it's only been going on since May. I just don't know what to think. I feel like I'm going to go nuts, lol.

At least I know that all this crap I'm feeling isn't in my mind. I just hate the waiting. Has anyone had similar stuff with their brain because of PSC or am I dealing with yet another completely different illness?

PBC, PSC, Raynauds, hypothyroid, ??? -- Ian Cribb P.Eng.

July 17, 2008